Pain with positive ANA, ran out of ideas

[zestyequinox]

Firstly, I'm not sure if all of these symptom are related.

I'm 21 years old and have been having extreme joint pain in the past couple years. I've had moderate joint pain since I was a kid, but every doctor brushed it off as either growing pains or thought it was all in my head, so my mom stopped taking me to doctors and I just lived with it, thinking I was just over exaggerating.

Last year I was fed up with needing help getting up the stairs, standing up from chairs, etc. There's no reason why a 20 year old needed assistance walking. I went back to the doctor in the town I now live in and he tested my blood, which came back positive for ANA (TITER 1:80 H and PATTERN homogeneous). I saw three rheumatologists, the first said I had systemic lupus (even though I don't have rashes and the lupus test came back negative) and I did take plaquenil for a month or so, but it made me extremely nauseous. The second said it didn't sound like lupus but she needed to do more tests but didn't really get any more information, the third said that it's normal for females to feel this and that I'm fine.

But I don't feel fine, nor do I know any female my age that has this much pain. I know I'm not imagining all of this. I can't squat down without my knees popping or feeling like my knees can't hold my weight (I'm 140 pounds and 5'3"). My general doctor thinks I have patellofemoral pain syndrome, which completely describes the pain I feel, but I'm not super physically active. Usually it's associated with people who overuse their knees from running too much. I walk to class and I walk my dog, but that's the extent of what I can do. The smallest tasks have become nearly impossible. I feel like I move like I'm 80 years old.

My shoulders don't rotate right, they pop if I try to raise my arms while they're flat which hurts really bad, it feels like they're popping out of place at about 90 degrees from my side.

My hips pop, by back pops, nearly every joint on my body that can pop, pops. None of my joints are swollen or discolored. I've tried at home stretches, swimming (which helped a little), strength training (which I continue to do), and have an appointment for physical therapy. My limbs feel numb sometimes, but I think that's because all I can really manage to do at this point is lay in my bed. I've had to quit my job, I do my classes from my home because my university is very accommodating.

Other than my mom having some joint pain, no one in my family has the same issues. I feel like I've had an adequately healthy lifestyle. I'm a vegetarian because of my acid reflux and gut issues, but I eat really healthy. I record everything I eat in an app to make sure I get a good amount of protein, carbs, potassium, etc. and I take multivitamins for vitamins A, C, D, E, B-6, B12, etc. I've stayed as active as I can and routinely stretch.

Other medical history: I have a history of high blood pressure (around 150/100) so I'm on medication to help with that. My resting heart rate is usually in the 90s. I've had asthma since I was 6 and have a rescue and steroid inhaler (only one in my family) and while I'm not allergic to gluten, I'm gluten intolerant which triggers my asthma, so I stay away from it as I can or just use whole wheat. I have extreme depression and anxiety disorder, which I'm medicated for and runs in my family. I've had sinus issues since I was a kid (only one in my family), and had and endoscopic sinus surgery when I was 16 to help with it. I have acid reflux, as I mentioned, and I also have pain in my lower abdomen when pressure is applied to it (already checked out by a gyno, but nothing abnormal).

I'm just not sure what to do at this point. On paper, everything should be fine (other than the positive ANA). I'm a little afraid to do physical therapy, as I've heard that it can have adverse affects in some cases. I just don't want to live with chronic pain the rest of my life and I'm tired of going to so many doctors with no answers.

[Chloebug2998]

Why would you eat while wheat if you can't have gluten? Wheat is a food you cannot have if you have a gluten sensitivity  perhaps that is part of your problem. It does not matter if it is whole wheat 9r not wheat is wheat.

[TheLightSeeker]

Hi zestyequinox.

There must be something underlying all the symptoms and conditions you are mentioning.
A Functional medicine approach is necessary, in order to put a direction in this investigation.
Conventional doctors have not helped much, so there's a great likelihood that very little will change if you continue seeking their help.

Gut health cannot be separated from overall general health.
The fact is that about 80% of our immunity comes from the gut.

A few things for you to look into:

1. Stomach acid levels
2. Deficiencies in key minerals, vitamins and nutrients.*
3 Leaky gut syndrome testing. Zonulin testing is a more recent one for LGS.

*Watch out for B12, folate (need an MMA and Homocysteine test for accuracy), vitamin D (should be at least 40 ng/ml and ideally 60 ng/ml +, minerals (need RBC minerals test), iron panel, hormonal panel, neurotransmitter levels or assessment, functional stress profile ( 4 x Cortisol and 2 DHEA-S-saliva).
Note that many conventional medical tests are flawed.
Some of the tests I listed may be questioned by your doctor so I suggest you look for a reputable Functional Medicine  or Holistic doctor in your area.

Have you ever done any genetic testing?
My daughter was having a great number of issues like G/I, depression, anxiety, many sensitivities allergies etc .
We took the holistic/Functional medicine route, ordered genetic testing from 23&me
which I analyzed and interpreted  myself.
I then used this info  combined  with methodologies and principals from Functional
Medicine (which I have been studying for many years) managed to implement a protocol (albeit strict) which works for her and she can now lead a productive life.

Could you post your meds you're currently on, including dose and frequency.
You may send me a private message if you prefer.

BTW the "positive ANA titer at 1:80 is considered negative by most Rheumies, so it's mostly dismissed.

I must mention that my comments are not intended to replace medical advice.

Best wishes,
Niko

[Gonecayman]

My 17 yr old daughter is also high stress, has stomach problems thst sound like acid since the 5th grade..  She was diagnosed by an allergist doctor as having immunoglobulin A deficiency and also Muscoskeletal amplified pain syndrome.  She sleeps a lot and the doctor said that the pain she has keeps her awake at night. Recommended taking up swimming or other exercise, but she's  a nerd, doesn't ever want to go outside.  Plus, she has nasty smelling sinus problems that never go away, even after an antibiotic.  Going outside in a town more windy than Chicago makes her sinus problems worse.  She did allergy shots for over a year...they fixed nothing

I have lupus but never a symptom, though I also do not sleep well at night for a few years now.  Can't get comfortable, often lots of pain.
I don't think we have any holistic people in Amarillo, Tx.  My daughter's pediatric doctor decided she might need psychological help, after dicussing her stomach problems with her, that seemed triģered by fried sweet and or fatty food items, like donuts.  She felt faintly nauseous just smelling donuts cooking After his comment, I dumped him.